What Do Patients Really Want?-Eliciting preferences case study-

SICK OR TREAT SESSIONS, OCTOBER 2015

How do we elicit patient preferences ?

Discrete Choice Experiments

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Discrete Choice Experiments (DCEs) requires decision makers to select their preferred option from a set of competing

alternatives (which collectively form choice tasks)

Broadband Choice

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Respondents are shown multiple choice tasks, over which the features of the alternatives are

systematically varied, allowing for a determination of how each of the features impacts upon the

preferences of a sampled population.

Student Choice

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Art Gallery Choice

DCEs are now used by many fields to understand and model the trade-offs and preferences revealed

by the choices that people make.

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McFadden

DCE Origins – Long and established history

1931 2000

Thurstone

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High profile case - Apple vs Samsung

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Deliverables – Dashboards (examples)

Case Study:Chronic Lymphocytic Leukaemia (CLL)

Approx. 1,300 people diagnosed each year most common type of leukaemia generally a rare disease - 0.8% of all cancer mortality rate 375 / year

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Our approach

This research seeks to outline a methodological approach to elicit and quantify patient values in a

systematic way for the purpose of treatment evaluation

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Sampling

• Currently recruited 65 patients – 25% through Healthcare team (mainly specialists) – 75% through advertising

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Qualitative Research Findings – Overview

CLL: Patient Associations

CancerLeukaemiaShock (at diagnosis)

SeriousThreat

Malfunction

Tiredness Fatigue Lethargic

Stubborn Chronic Always in

the background

Uncertain; hidden / un-predictable

An ongoing struggle / challenge

Frustration

ResignationAccepting Philosophic

al

12 In-depth Interviews Mixture of face-to-face and phone

interviews Conducted by an experienced Qual

interviewer

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CLL Disease Burden: Emotional and Physical Impact

CLL symptoms*: tiredness / fatigue [particularly leading up to requiring treatment; when immune system is low; when patient has low oxygen levels – this can lead to patient having to cease physical activity and hobbies (e.g. exercise / sport); patients commonly require more sleep

Co-morbid conditions: including high temperature and pneumonia (attributed to a depleted immune system) – this can lead to hospitalisation for antibiotic treatment and monitoring (mentions of 3 days- 6 weeks hospital stay)

Side effects: with chemotherapy (particularly nausea) – a high dependence on caregiver during this time)

Inability / reduced capacity to work: can cause financial stress and can change family dynamics (i.e. wife has to work)

Physical Impact Frustration: due to CLL being a chronic

condition, currently no cure, prior therapy unsuccessful, impact on daily life (i.e. inability to participate in activities; e.g. play sport)

Concern / worry: CLL described as a ‘mental challenge’ (future is uncertain – reluctance to make plans; patients can never feel ‘free’); concerns about dying and impact of this on family, an unpredictable condition (can flare up unexpectedly)

Paranoia: patients are vulnerable to infections and are concerned about visiting places where they may be ‘at additional risk’ (e.g. hospitals; shops)

Disappointment: discouraging blood tests results (i.e. residual leukaemia cells)

Anxiety / nervousness: particularly when obtaining blood test results

Shock: initially, upon diagnosis Lack of motivation: a reduction in ‘drive’ -

more so when undergoing chemotherapy treatment

Emotional Impact

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CLL Disease Burden: Social and Financial Impact

Financial impact of CLL has been variable for patients

A few patients reported a low impact (due to financial security, part-time employment, Medicare, private health insurance)

A couple of patients reported a high financial burden due to:

Inability to work Attempting to find a cure

(experimenting with alternative medicine has been costly)

Substantial costs incurred by carer (based in rural location) when visiting patient in hospital (i.e. travel; accommodation, meals, laundry)

Financial Impact Unable / less able to socialise: too

unwell during periods of treatment (i.e. chemotherapy), tiredness / fatigue due to CLL

Some social withdrawal: one patient reported feeling defined by their CLL (change in personality - have become more subdued); preference for one to one vs. group situations (one report of feelings of alienation in larger social settings; preference for socialising only with family /and close friends)

Nutritional demands can affect type of socialising: e.g. avoid going to restaurants (preference for home cooked meals); very limited alcohol intake

Social Impact

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DCE scenario – Task information

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DCE scenario – Online Survey

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Results - Dashboard

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Dashboard – Treatment Index

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Dashboard – Treatment Index (changes)

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Dashboard – Treatment comparison

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Dashboard – Treatment comparison (changes)

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Dashboard – Relative Attribute Importance

Case Study: Quality of Life (QoL)

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http://qualityoflife.choicestudies.com/

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Dashboard – Treatment comparison

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Dashboard – Treatment comparison (changes)

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Dashboard – Relative Attribute Importance

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Dashboard – Individual QoL scores

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Dashboard – Individual QoL scores

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Dashboard – Individual QoL scores

Case Study: FDA Guidelines

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FDA Study – Weight Loss Device

Patient preferences considered for the first time in FDA decision to approve first-of-kind obesity device

N=540 United States adults with body mass index (BMI) e30 kg/m(2) evaluated trade-offs among effectiveness, safety, and other attributes of weight-loss devices in a

scientific survey.

DCEs were used to quantify the importance of safety, effectiveness, and other attributes of weight-loss

devices to obese respondents.

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FDA Study – Weight Loss Device

Developed a tool to estimate the minimum weight loss acceptable by a patient to receive a device with a given risk profile and the maximum mortality risk tolerable in

exchange for a given weight loss

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FDA Study – Benefits and Risk

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FDA Study – Patient Preference Guidelines

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FDA Study – Patient Preference Guidelines

• Encourage voluntary submission of patient preference information

• Recommended qualities of patient preference studies which may be valid scientific evidence

• Recommendations for collecting patient preference information

• Recommendations for including patient preference information in labelling for patients and health care professionals

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Patient Engagement – Treatment Lifecycle

Where to from here …..

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Where to from here …….

Patients I4C

Government

Healthcare Team

Industry

2016 Stakeholder Forum Incorporating patient preferences into health

technology assessment decision making

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Where to from here ……. Benefits

Patients I4C

Government

Healthcare Team

Industry

Individual feedback on preferences /

comparison to other patients

Patient preferences in

……

HTA decision making

Treatment decision making

Treatment alignment / research

development

2016 Stakeholder Forum Incorporating patient preferences into health

technology assessment decision making

Discussion

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